N.E.D. – THE BAND

I have heard that having a guinecological surgeon and oncologist in one is a good find.  I was lucky in that even though I didn’t have a guinecological cancer, there was one of the best of them in the building when my oncologist suggested a hysterectomy along with my mastectomies.  Not only is his picture on the brochure for The Da Vinci machine which shows he knows his stuff, his picture is also on the cover of a new CD his band N.E.D. No Evidence of Disease has just put out.  Every member of the band is a guinecology oncologist or guinecology medical person of some sort.  Here is what I picked up at his office about their mission:

N.E.D. is made up of six gynecologic oncologists who always hope to deliver the sweetest message their patients can ever hear: “NO EVIDENCE OF DISEASE”.  Their mission is to enhance knowledge about gynecologic cancer, to save lives, as well as to bring hope through music to those undergoing treatment, and to the world at large.  Proceeds from every CD sold will be donated to N.E.D. Fund at Gynecologic Cancer Foundation (GCF), which promotes awareness and early detection, and research of gynecologic cancers.

Order the CD at:  www.marjiesfund.org, www.amazon.com, www.borders.com, www.barnesandnoble.com, www.itunes.com    

I wouldn’t normally promote one thing over another, but I know Dr. Winter personally and he’s a good guy who believes in their mission.  He never once said anything to me about his band, or their projects, I only learned of it through other doctors and a small flyer at NW Cancer Specialists.  I haven’t heard the music myself yet, but I am going to pick up a cd soon because I know the proceeds are going to a good cause.

Well-done

Would be a nice way to describe my chest and lymph node area right now.  I think burnt to a gross bubbling curdling painful peeling mess is more accurate.  I am excited to say I finished radiation Monday of this week.  I went twice a day for 4 and a half weeks.  Even on Black Friday, they actually opened the place up just for me.  I didn’t miss a single appointment and when the machine broke I agreed to driving half an hour to a different facility.  When I woke up Tuesday morning, I was in a short state of confusion about what to do with myself.  Of course I have my 2 year old and 4 year old to keep me busy, and there’s holiday stuff to be done, but surely I should be at the cancer center at some point today right?  Then I remembered, nope I’m done.  From here it’s just Herceptin every three weeks with doctor’s appts. and check-ups.  Feels kind of strange after the last 8 months.  I asked when my first post-cancer scans would be and was told ‘not for a while’.  I’ll ask my regular oncologist at my appt. next week because I think I would like to know that I’m still clear.  As for regular life, I am looking to the future.  I enrolled to take a couple of medical classes starting Jan. 4th, thinking to combine my business degree and background and maybe work in the medical business field.  We’ll see.  It’s a nice relief to see a possible future after being diagnosed 8 months ago with IBC, what goals I’m working on don’t seem as important this minute as the fact that I’m still here to work on them.

I’m home (by Lyn)

I have more day to day info at my personal blog, but I wanted to post here that I’m home from the hospital after surgery and give an update.  I had a modified radical on my left breast, a bi-lateral on my right breast, and a full hysterectomy all at the same time on Oct. 2nd.  I wish I could say it went smoothly, and is going smoothly at home recovering, but it was tougher than we expected.  The hyster surgeon ended up spending an extra hour operating on me due to scar tissue from my c-sections that had somehow glued my uterus and bladder to each other or my insides, or something.  My bladder took the blunt force of that part of the surgery and had to leave the catheter in for 4 days to let it rest.  I was supposed to go home after 2.  Then I ended up getting a nasty bowel infection while in the hospital.  I was released on Weds. the 7th, and in the ER on Friday the 9th due to the infection getting worse.  Then Friday night my bladder started leaking (this was just this weekend) so here I am trying not to move my arms too much yet unable to use my tummy because of the bowel infection, and now my bladder LOL.  I was a sight!!!  At one point Saturday I was laughing so hysterically at how pathetic the situation was.  But lo and behold, Sunday brought some relief and I did feel a little better yesterday from all of it.  My infection is still not gone, but it is improving and I just called the doc about my bladder and he sees me tomorrow.  He told me at the appointment in a little joking matter ‘if I break it I fix it’, so I fully intend for him to fix it!  I get my right drain out this afternoon, my left is still not ready and will probably be at my appt. this Friday.  I don’t have alot to say on the emotional aspect of what I’m feeling about not having my breasts, I’ve been so consumed with all the unexpected pains to think on it much.  I’ll get there I’m sure.  I’m still in alot of pain, I heard that the mastectomy doesn’t hurt that much because they cut alot of nerves with it, but my left side does hurt the most out of all of it. When the pain ebbs, the infections are gone and my bladder is fixed, maybe I’ll be able to say it was worth having it all done together but for now I’m undecided.  My advice to anyone contemplating having such a radical surgery is this:  don’t do it the week after you finish 5 months of chemotherapy.  Give yourself a few weeks to recover from chemo first.  I’m convinced that my compromised immune system is what has made this so much harder.

On a brighter note, my pathology reports came in.  4 lymph nodes positive out of 15 and only trace ‘miniscule’ is the word the surgeon used of cancer left in the breast itself.  I have Inflammatory Breast Cancer, so it’s a little different in that it was spread all over the place as opposed to being 1 tumor.  She said there was no live cancer visible to the eye, and only under the microscope did they find the little bit they did.  It was all dead cancer/scar tissue.  She was very confident that she got it all (one plus side to having chemo the week before) and had definite clear margins.  She was thrilled as was my oncologist, and said that now I can consider myself cancer free.  Hmm… that sounds too weird yet.  Maybe after radiation and my next scan…

I will start radiation in about 3 weeks, and instead of the 6 weeks of once a day daily rads originally planned, my oncologist is suggesting a regime of twice a day rads for 3 and a half weeks.  Apparently studies are showing that it has excellent results with IBC patients.  I haven’t met with a plastic surgeon yet, nor the radiologist, I’m just trying to get through the next 2 weeks without any further setbacks.  Wish me luck.

My PET/MRI Results

I had to wait until my appointment last Friday to get the results of my MRI and PET. I thought for sure Dr. Webster had bad news because she didn’t call and wanted to wait until she saw me to tell me, I was pretty much freaking out. But it turns out I have great news to share.

My PET showed no cancer anywhere in my body, including my lymph nodes and possibly not even in my breast. It picks up inflammation, so it’s hard to tell from a PET about the breast itself, but I am free and clear of cancer everywhere else.

My breast MRI showed no tumors in my breast and the report read ‘lymph nodes all appear normal’.  No cancer in lymph nodes! (appears at least) The tumors that were there before have dispursed (they were just clumps of IBC anyway not really solid tumors) and everything it did pick up said ‘possible whatever the word is for dead cancer’ meaning it didn’t pick up any definite live cancer in my breast, and what it did pick up could just be dead cancer or thick areas. She hadn’t seen the report when I arrived, and we read it for the first time together. That was nerve racking let me tell you. But reading for myself that the tumors are gone was huge as I had 3 when I was diagnosed with a possible lymph node that was enlarged.  Dr. Webster’s words were actually ‘it is the best possible news we could have gotten’.  So surgery is on for next Friday, Oct. 2nd. I can’t believe I’m actually typing that I’m having surgery next week, but I hear it’s true.

I wasn’t sure how to post my news because as happy as I was, I also felt guilty because of all the wonderful women I have met so far who didn’t get such great MRI news. I wasn’t even going to post it as I did, but then the last few days changed my mind because it IS GREAT news! Not just for me personally, but it means that the treatment itself is working, is doing it’s job. On a not personal basis, that’s wonderful news for IBC treatments in general.  I am responding to the chemotherapy and the last 6 months of chemo have been worth it. I have my LAST CHEMO tomorrow! Can you believe it??? My last chemo is tomorrow, I honestly can’t believe it. Cycle 12 of Taxol and my FIRST 3 week dose of Herceptin. I begin taking Herceptin only every 3 weeks tomorrow for an entire year, it will be given through my port. It isn’t chemo so the side effects are much milder I hear, and I shouldn’t have too hard of a time on it. I even get it through radiation which I will get every day for 6 weeks starting about 3 weeks after surgery.

crossposted on http://lynkelley.wordpress.com

Halfway done

I was standing in the check-out line at a clothing store this morning buying a new shirt and it hit me that this could possibly be the last time I get to shop for this body as I know it, in this size and shape.  My surgery of radical mastectomy/bi-lateral mastectomy/hysterectomy has been scheduled for October 2nd, 2009 which is less than a month away and I think I am just beginning to realize what this means.  Since my diagnosis in April ’09 I have been consumed with staying positive in the midst of all the IBC negativity, having chemotherapy and a mirage of new drugs along with it, trying to be a normal mom to my 2 year old and now 4 year old and a decently normal wife to my husband.  I thought I was doing a good job of it all, including truly facing what I’m dealing with, except I don’t think I really knew what the surgery meant.  I think most women on this site have had a mastectomy, so I know it is fairly common and that’s what I focused on.  But the new reality of not having my breasts anymore is surreal and terrifying.   My body is going to change.  I don’t know that I am mentally or emotionally prepared for that change yet.  I admit it.  I know that I need to focus on the purpose of the surgery- to make me cancer free- and I will do that but I can’t help but be saddened at the forced changes.  I do take comfort in knowing I will have reconstruction at some point, for IBCers it isn’t right away usually and I am expecting it to be about a year out from what my doctors tell me.  I have read most of the stories on here about ‘foobs’ and the different choices everyone has made with fascination, but I realize also with distance.  I didn’t relate to it so it was easy to read.  I am blessed to have ‘met’ amazingly strong women on this site and in person who have done it before me, and it’s your stories that give me strength to at least try not to focus on my fears and instead think about the future.  I want other newbies to know that it’s OK to acknowledge our fears-and this surgery is just as scary as IBC istelf to me- but we have to try not to let them take over.  I keep picturing this time next year when reconstruction is done, when I will hopefully be finished with Herceptin every 3 weeks, and my son will be starting kindergarten.  My daughter will be 3 and a half and it will be just us at home for the first time- now that’s exciting stuff I want to be around for, and thinking of these things makes the surgery worth it.  I have 3 more chemos to go, I was supposed to have it this week but the kids got me sick and I was unable to.  Then I consider myself halfway done with treatment, which sounds pretty awesome when taking it one day at a time. 

(ps I don’t know if this post makes any sense, my brain is so weird from the new drug doc put me on last week to help with the hysterectomy hormone issues but I tried:)